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Since being diagnosed with RA in 2009, it’s been an interesting process trying to find the right treatment combination. To date, seven biologics and four disease-modifying (DMARDs) medicines in various combinations and dosages have been tried. The DMARDS used in the past include the following:

Sulfasalazine – This was the first DMARD tried after diagnosis. An allergic reaction resulted in severe hives and cessation of this drug.
Methotrexate – Oral pills were used. Unrelenting and unbearable gastrointestinal issues precipitated an end to this trial.
Leflunomide (Arava) – This DMARD did not have much impact on RA symptoms.
Azathioprine (Imuran) – This DMARD did not have much impact on RA symptoms.
Methotrexate – Self-injections were used for the second trial of MTX. Injections were stopped about a year later due to evidence that they were contributing to migraines.

Rituxan (Rituximab) is the latest biologic and I’ve been on it for 1½ years. The typical suggested treatment plan is two infusions every six months but I’ve been on a schedule of two doses every four months. The last infusions were in October and November but it seems that its impact is not just not optimum. Joint pain, swelling, and fatigue are all on the increase and neck surgery six months ago coupled with an elbow surgery in the near future lend evidence that Rituxan alone is not keeping the disease in check. After a discussion with my rheumatologist this week, it was decided that adding another DMARD might help control the disease processes. There aren’t many choices left and my rheumatologist suggested trying Mycophenolate, or CellCept, in combination with the Rituxan infusions.

CellCept was originally developed to help organ transplant patients from rejecting their new organs. It works by suppressing the immune system. Now it’s commonly used to treat lupus but is also used for other autoimmune diseases including rheumatoid arthritis. As with many DMARDs, common side effects involve the gastrointestinal system. Blood counts can be impacted so regular blood tests are conducted. [1] There aren’t many published studies on CellCept although it’s been proposed as an alternate DMARD for those with refractory disease not responding to other treatments. [2]

A new treatment experiment begins. Hopefully it will bring some much needed relief.

[1] http://www.rheumatology.org/Practice/Clinical/Patients/Medications/Mycophenolate_Mofetil_(CellCept)_and_Mycophenolate_Sodium_(Myfortic)/

[2] http://www.smw.ch/docs/pdfcontent/smw-12441.pdf

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When first diagnosed with RA over five years ago, I was prescribed oral methotrexate (MTX). After a month of taking the pills, I felt terrible and was basically non-functional. It felt like a truck ran over me as I had no energy, felt sick at my stomach non-stop, and had headaches. The RA symptoms were bad enough but this just added insult to injury. My rheumatologist finally told me that I clearly could not tolerate the drug and to stop taking it. The side effects subsided within a few weeks.

Several years later, and with a different rheumatologist, I asked about taking MTX injections because I was desperately trying to find a treatment combination that worked. It was recommended to add MTX with the biological medicines I was taking as the combination of the two typically produces better results. I started take methotrexate via weekly self-injection and found that the nausea side effects were much less than with oral pills. I seemed to tolerate the MTX much better when injecting it and adding both folic acid and leucovorin. I rarely felt nausea and did not loose any hair.

But an increase in migraine headaches over the past year coincided with the time I started taking MTX. While not one of the more commonly reported side effects like nausea or hair loss, headaches can come from taking MTX.[i] [ii] As my neurologist stated, the causes of the migraines are likely based on multiple factors including genetics, my fight with RA, and the medicines I take. During the past few months when the headaches increased in number, I completely stopped taking methotrexate in an effort to eliminate any possible triggers. We’ve been able to reduce the number of migraines through the use of gabapentin, a drug used for neuropathic pain, and botox injections (no, I don’t look any younger!). My rheumatologist suggested that I start retaking methotrexate by beginning with low doses initially and then increase back up to the dose I was taking before. I waited until I had been headache free for two weeks and then injected MTX. Within 48 hours I began to get migraines and fought off four bad headaches over the next five days. While it’s hard to determine direct cause and effect, this was enough for me to wonder if MTX was indeed a migraine trigger. I did not inject MTX the next week and did not have any bad migraines. I contacted my rheumy and she suggested I just stop MTX altogether. The good news is that during this time, Rituxan infusions that I started last September were starting to work at controlling my RA and this was during the time I had stopped taking MTX.

So for the time being, I’ll just stick with Rituxan as my main RA treatment. And I’ll be sitting in the infusion center this Wednesday starting my second series of doses.

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It’s December 23rd and most people are likely spending the day baking Christmas goodies, purchasing that last minute gift, wrapping presents, picking up family at the airport, traveling, or engaged in some other holiday related activity. Not me as I’m sitting in the infusion clinic. I know the place and nurses very well since I come here for RA infusions. But today I’m not here to receive Rituxan which is my current RA biological medicine. I’m here because 11 out of the last 13 days have been spent dealing with chronic migraine headaches. Everyday there’s a low grade headache lingering all day long and then a migraine comes  on rapidly usually in the early morning. I have to quickly take an abortive medicine like Imitrex and lay down in a quiet place to rest. But after two weeks of this, my neurologist wanted me to come into the clinic for an infusion of a cocktail of dihydroergotamine (DHE), phenergan (an antihistamine), and decadron (a corticosteroid) in order to put a stop to the migraine cycle. I had this same cocktail last year when taking Remicade and it works very well. I also started on a strong preventative medicine called topiramate (Topomax) about two weeks ago and that can take up to one month to begin working.

My neurologist believes that I already had a genetic propensity for migraines as I used to get them several times a year. But since dealing with RA, they seem to be rearing their ugly head more often and he believes that the combination of dealing with RA and the drugs I’m taking to combat the RA are contributing to the increase in migraines. I first noticed headaches when taking Humira years ago and then they came with a vengeance last year when taking Remicade. This lends some evidence that the RA medications may be a contributing factor in my case. Humira and Remicade are in the same class of RA drugs – TNF  blockers – and both list headaches as a possible side effect. But I’m currently on Rituxan which is not a TNF blocker and acts on a completely different part of the biological process involved in RA. Methotrexate also lists headache as a possible side effect. I’ve temporarily stopped injecting methotrexate until we get these migraines under control. This experience makes me question long term RA treatment but that discussion will wait until later in January when I see my Rheumatologist. In the meantime, shaking the headaches is the short term goal.

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In addition to my rheumatologist, I’ve seen two orthopedic surgeons for RA joint issues and surgeries and an otolaryngologist (ear, nose, throat) for sinus infections related to immunosuppressant drugs. Now another specialist has been added to the mix – a neurologist – due to persistent headaches.

Read more at ...http://rheumatoidarthritis.net/living/ra-can-be-a-real-headache-literally/ 

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Twelfth_century_headache_-_geograph_org_uk_-_456584Monday afternoon was spent receiving a Remicade infusion. No, it was not regularly scheduled infusion- it was moved up two weeks as my rheumatologist increased the frequency to every 4 weeks and increased the dose from 300mg to 500mg. This is due to the fact that the Remicade/methotrexate combination does not seem to be having the desired impact on RA as evidenced by increased joint pain/swelling, fatigue, and continuously high C-reactive protein tests over the past few months. After trying multiple treatment regimens over the past five years, this result does not surprise me and I knew that the adjustment was coming. Given past experience, I also knew that the chance of getting a “killer” headache after the infusion was high.

My rheumatologist has been working with a neurologist to tackle the headaches. The neurologist mentioned that at the basic level, many headaches are caused by some type of inflammation (see this overview) and he suspects that my body is reacting to the medications in a negative way. There is research to support the idea that inflammatory cytokines including tumor necrosis factor (TNF) may be implicated in causing migraines (see this review of research). Furthermore, it is suggested that anti-TNF medications may be beneficial in treating headaches although no data currently exists to support this notion (for example, see Bo, et al, 2009). But in fact, just the opposite seems to be occurring with some patients taking anti-TNF medications like Humira and Remicade. TNF inhibitor medications used in inflammatory autoimmune diseases are associated with causing headaches. Read any medication guide for these class of biological medications and you’ll see that headaches are one of the most commonly listed side effects (for example, see the FDA guide for Remicade).

My neurologist indicated that two ways to treat headaches include abortive – knock it down after it starts, or preventative-stop it from happening in the first place. I keep a small pill box of sumitriptan (Imitrex) handy at all times in case a bad headache sneaks up on me. I also take a very low dose, 10mg daily, of nortriptyline as a preventative. This old class of tricyclic antidepressant is also noted as helping manage pain and many rheumatologists use it for fibromyalgia and RA. But the “big guns” come out at the time that I receive an infusion. Last month I was given an injection of 150mg of solu-medrol (methylprednisolone) corticosteroid as a powerful anti-inflammatory headache preventative. The nurse slowly injects it into the infusion line and I could feel a tingling move up my arm, my heart rate increase, and a blast of energy come out of nowhere. Just for perspective, the first day on a Medrol dose pack (see my last post) is a total of 24mg of methylprednisolone. 150mg is a high dose of steroids coming all at once! Forget getting any sleep that evening as insomnia is a classic side effect. Last month the solu-medrol injection seemed to help prevent Remicade-induced headaches. But within two hours of receiving the 500mg dose of Remicade on Monday, a massive headache bore down and lasted for the next 24 hours (of course, the lack of sleep probably didn’t help). Two days later it still feels like I received a big butt whipping.

Side effects are one of many reasons that RA patients stop taking medications. Uncontrolled and debilitating headaches certainly are causing me to think carefully about what’s going with my treatment regimen. I can still recall a month or so early last spring when I stopped Actermra infusions and was waiting to start Remicade infusions. It was a wonderful time as my mind was clear and I had no headaches. Yet, the RA was not under control. While taking no treatment for a while helped reduce headaches, the alternative of receiving permanent damage and disability from uncontrolled RA sounds even worse. Of course, my RA is not under control right now anyway!

Creative Commons photo credit: http://www.geograph.org.uk/photo/456584

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medrolRA created a desperate situation. Joint pain, stiffness, and swelling are at high levels. You know it’s bad when one can notice swelling in a skinny knee (just ask my wife about my bird legs). My rheumatologist commented the other day, “your hands feel hot today” intimating that inflammation was busy at work. Energy levels are such that simple daily tasks like cooking dinner are difficult. Cognitive functioning is so impaired that tackling issues at work and home are close to impossible (missed work…that’s another issue for another day). Systemic inflammation seems to running rampant – a recent C-reactive protein test was near an all- time high for me at 1.6 mg/dl and it’s been this high for the past four months. Tweaks to long term treatments are yet to show an impact.

It’s hard to believe but I actually asked my rheumatologist for steroids in an effort to knocks things down a notch. If you’ve read this blog over the past few years, you know that I’m not a big fan of corticosteroids (see earlier posts on Prednisone Side Effects, Love/Hate relationship,  and  my first post on the subject where I compared them to Nuclear Weapons). A stash of prednisone pills sits in my bin of prescriptions but it is avoided like the plague as the side effects often feel worse than the RA. My rheumy recommended something different and I agreed to try a Medrol Dose Pack which contains a batch of 4mg methylprednisolone pills titrated down over a period of days (see photo). I only had one experience with this approach back in 2008 when first diagnosed. These dose packs are used to treat a variety of inflammatory conditions (see package insert).

The first day brought a welcome burst of energy, much lower joint pain, an ability to focus, and the recurring headaches disappeared. It felt wonderful. Then it came time to sleep and it was clear that wasn’t going to be easy as my body and mind were both hyped up. An Ambien (zolpidem) sleeping pill was used to help which it did. Day two didn’t bring the same levels of energy and joint relief and I collapsed in a puddle left wondering if it was worth it. The next few days will serve as an experiment to see if rampant inflammation from the RA can be wrestled into submission by this powerful drug. If not, I’ll just have to wait to see if long term treatments will start working. After being through so many treatments over the past few years, my rheumy actually used the term “refractory RA” with me the other day which doesn’t engender much hope. In the meantime, I’ll seek any relief from any front including the corticosteroids I love to hate.

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When dealing with a chronic illness, it can sometimes feel like being a patient is a full time job. Last week drove home this feeling. It began Wednesday with a visit to a new internist (general practitioner-GP). I decided to switch GPs for several reasons primarily to get all of my doctors under one clinic roof who all share the same electronic system and who can easily connect with one another if needed. Being that this was a first visit, additional medical history paperwork was required. The evening before, I typed up a brief history, printed it out, and brought it along. My daughter joked that it looked like I was writing a school report! I’ve learned that this is a great way to lay everything out in black and white so the doctor can get the whole picture quickly. This visit ended with the scheduling of a follow-up in two weeks along with lab tests for fasting glucose and lipid panels (related to metabolic syndrome – see earlier posts).

On Friday, most of the day was spent on medical tasks. It began with a weekly methotrexate injection right after breakfast. I learned that the syringes sent by the mail order pharmacy had huge needles which were not fun pushing into my stomach. I made a note to pick up smaller insulin needles later in the day.

I then headed out the door for a visit to my rheumatologist. I was so happy when the nurse and not the medical assistant came to bring me to the examination room. This was because I needed her to help process a co-pay assistance for the last two Actemra infusions I had in March and April. The almost $900 of co-pays were sitting on my bill from the clinic and I wanted to get those cleared. The nurse needed to make copies of the bill and my co-pay debit card in order for money to be loaded on the card so I can pay the bill. Once the funds are loaded, I will need to go to the business office of the clinic to pay the bill.

My rheumy came in and we had a long discussion about how things were going. She decided to up the dose of Remicade to 600mg per infusion and give infusions every four weeks instead of every six weeks. We’re just not seeing the impact expected by these RA treatments. After being on so many treatments, it’s easy to get cynical and I work hard at trying to avoid falling into a negative mindset. We also discussed recurring headaches and she added leucovorin once a week to be taken after the methotrexate injection. Leucovorin in a form of folic acid and is used to combat side effects of methotrexate. She also decided to give a cortisone shot in my right knee which has been getting worse over the past few months. It was a pretty painless procedure and after several days I can notice much less pain and popping. I just wish every other joint could feel that way!

After the rheumy appointment ended, I went straight to the infusion clinic to see how soon I could get in for an infusion at the new dose and treatment schedule. They said they could get me in that afternoon. I scheduled it and then as I walked away, I realized that insurance approval would likely be required first. I went back to the rheumy’s office and talked to the nurse. She confirmed that approval would be required and that she would call me when it came. Back up to the infusion clinic to cancel the appointment! But I wasn’t done with the rheumy yet. She ordered five lab tests – routine liver, kidney, and inflammation tests – so I headed to the lab for a blood draw. The c-reactive protein test came back high once again confirming that systemic inflammation is actively at work and the RA is not under control (but then again, I already knew that based on the way I feel).

After this appointment ended, I had an appointment with my neurologist. Nasty headaches had been raising their ugly head again and he wanted to figure out what was going on. The good thing is that the addition of an injection of solu-medrol cortisone prior to Remicade infusions helped control headaches associated with the infusion. He believes that my body is reacting to all the medicines and he added a preventative medicine in addition to the Imitrix abortive medicine I already use. He said that he would want to get an MRI if I wasn’t better in a couple of weeks.

It was noon by the time I left the clinic and then I went to the pharmacy to pick up some scripts – and the smaller syringes! That took about an hour as there were questions on the script along with new health insurance to process (thanks to changes in U.S. healthcare laws).

Almost the entire day was spent navigating medical systems and providers. I know the clinic like the back of my hand…best place to park, location of restrooms, coffee shop on 1st floor, lab on 2nd floor, rheumatology office 4th floor, infusion clinic 5th floor, neurology 8th floor, internal medicine 9th floor. Whew! I was tired and ready for something non-medical related at the end of this crazy day. Add to such a day the time spent in the infusion clinic, time processing insurance and payment paperwork, communicating with doctors via phone and email, and down time just trying to rest, being an RA patient feels like a job.

The good news is that during one of the of doctor visits, I picked up the July issue of the city magazine because the cover story was about “Top Doctors” in the city. I glanced through the different sections and was so pleased to find my rheumatologist and neurologist both listed as one of the top six in the city in their respective specialties. This helped confirm that I choose the right doctors and was under quality care.

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